One of the most important things about living with a chronic illness is the ability to take things in stride. The ability to not dwell on bad news for too long. Not let it consume you. That while it’s ok to be vulnerable and occasionally feel bad about what’s going on, it’s even more important to bounce back from it. Because bad news will come. There will undoubtedly be hurdles and challenges and complications. There will be things that you can’t predict. There will be things that don’t make sense. Moments that leave you scratching your head searching and searching for an answer. And if you let these moments get the best of you than the disease is stronger than you are. All the hard work and fighting that has been done to date is for nothing. One incident, one event, one mishap should not keep you down and make you question everything. One of the most important things I’ve learned is the ability to take things in stride—figure out what’s happening, digest it, try to figure out a solution and get back on the horse. Negativity breeds negativity. And while it’s ok to feel bad or sorry for you, it’s even more important to get past it and try to get on the right path. The path that leads to success. The path that leads to achieving what you set out to do and living your life.

For a year and a half my PFTs were lower than my baseline and after my doctor’s appointment in February I was unsure if they would ever bounce back. I was confused, frustrated, annoyed, nervous and scared. I hadn’t done anything wrong and there was no real explanation as to why this was happening. Even though everything was the same, something had to change. Could it be the stress of life? Could it be the medications I was taking? My work-life balance? My workout routine? My treatment plan? Many questions with many unknown answers. The first thing we tried was a new antibiotic. Over the years I’ve built up a resistance to a few different antibiotics so perhaps introducing something new could give me the kick start I needed to get back on track. Coupled with a few additional inhaled medications, mixing up my exercise regimen and taking full advantage of a lull at work to sleep and rest a bit more it was just what my body needed. A few weeks passed and I went back to the doctor. Feeling better, stronger and full of energy I was ready to tackle the PFT with the hopes of getting my numbers back up. And well, they were up. Not my highest, but at that point in time I would’ve taken higher than where I’d been for the past 18 months. A victory in my book. A step in the right direction. A few days later I ran the New York City half-marathon. Coming of a dreadfully cold winter where outdoor training was extremely limited I had no expectations. I was just going out to have fun, enjoy the day and the race atmosphere. I started the race with a buddy of mine, Chet, running through Central Park at an 8:40 pace. I was feeling good. Half way through the park Chet and I split; left to run the last 10 miles by ourselves. I was feeling strong and my pace was dropping. Miles 3-5 were run in 8:15; mile 6 at 8 minutes. Out of the park and straight down 6th Avenue to Times Square I felt really strong. My lungs felt great. Deep, easy breathes. My stride felt strong. I was in the zone. I settled in and ran sub 7:30 minute miles for the second half of the race. While numbers are important and a key indicator of health and how my lungs are functioning, there is no better indicator than how I feel. On that day, in that moment, I was happy. I was relaxed. I was at peace. I was doing what I love to do and no one could take that away from me. I’d once again found my stride.

Thank you for sharing your story. I just found your blog on the Boomer FB page. In just reading a few posts, you are truly inspiring. My son is 5 weeks old and was diagnosed with CF a few weeks ago. My wish for him is to grow up taking things in stride with the same positive attitude. Congrats on your race. I am also a runner and hope to join a Team Boomer event in the future.

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lora

3/28/2014 05:01:55 am

Thank you for your posts. They are inspiring. I read most of the posts and feel like you have been watching our familys life. My son is 7 diagnosed with CF last june. We ha e good days and bad days, but mostly good days. My son is a trooper but at times he gets upset, frustrated, angry. I knlw tjse feelings are normal but it is so hard to watch himstruggle. I too at times feel dread waiting for the other shoe to drop, waiting for bad news. It has only been a year since his diagnoses amd his numbers are fantastic (his pfts are over 100%) up from 40% at his first hospial stay and since june he has put on 10 pounds. But i supose we will always live with some amount of fear. Thatk you again for the posts, maybe someday my son will be a memeber of team bommer.

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About Steve...

My name is Steve Bell. I'm 30 years old. I run marathons. I play soccer. I work in advertising. I read books. I like to travel and go to the beach. I like spending time with my friends and family. I smile, laugh and tell bad jokes on a daily basis. I also have Cystic Fibrosis. It's a lung disease. It's fun. This is my story.